This is the post that a friend told me I would write eventually. The one about having a child with typical development following a child with special needs. The one that has me simultaneously in awe, and slightly heartbroken.
In a nutshell, a hard post.
This morning I decided to organize Melody’s clothes. She has a few bins of hand-me-downs from friends that are willy nilly all over her room and it was high time that I went through them. On the dresser was a Baby Einstein book with buttons on the outside. When pushed, they play short snippets of classical music. Evan had a few of these books. I remember his adoration of them. I remember being in a store and giving him one of them and he would play with it for the entire store visit. This was Evan’s norm. He could be given a toy- especially a musical or push button one that had some type of cause and effect mechanism and he was good to go. I could go to the basement to do laundry while he sat on the floor of his pack and play at 18 months playing with a musical box, pressing each side over and over, laughing, singing, etc.
So today, when I ripped off the plastic on this book for Melody, I thought, “Hmm, this will be perfect. I will give her this book, she will be so excited to play with this new electronic toy- that I will be able to organize and she will be happily occupied. (and without T.V! score for Mommy!)
I gave it to her, and she smiled through her pacifier stuffed mouth and tapped the book on the cover while looking at it quizzically.
I turned to my pile of clothes and started sorting. A few minutes later I noticed M walking around her crib. Thought nothing of it. Still sorting. Then a few min after that she was in her closet trying to open boxes. Few min after that, she was crawling in my lap, trying to get me to put a headband on her head through several gestures and vocalizations.
That musical book is not magical.
Melody is not caught in its spell like Evan was. (and might still be if given the opportunity. do NOT mention Fisher Price to that kid)
She is more interested in playing.
interacting. keeping joint attention.
throwing fits when she doesn’t get her way.
doing what 14 month olds do.
Not what my child with Williams Syndrome and autism did at that age.
I have these moments a few times a week. Actually probably a few times a day but I don’t dwell on every one. Melody is not a baby genius. She is not advanced. She is just developing at a typical rate. What is true is that things come much easier to M than they did for Evan.
On one of our trips to see Dr. Mervis, I remember her saying that Evan really needed to practice dropping objects into containers. I think he was about 18 months at the time. He would hold things over a box or a bucket but not let go. This was HUGE in the eyes of the early intervention evaluators. I had never thought about it before they pointed it out to me. I can remember like it was yesterday, the night after we saw Dr. Mervis- Evan dropped his elephant toy into one of the hotel room drawers and we all celebrated. It was a massive milestone and we lamented that he waited until AFTER the research study to do it.
I can’t remember the first time Melody dropped an object into a container. It’s as though she has always done it. I can even ask her to retrieve a toy and she will crawl behind furniture to get it and bring to me.
Climbs. Every. Thing
This difference in development is both fascinating and tough. I constantly am asking Todd, “Did you see her do____________??” Did you hear her say ___________? Did you see her point to her body parts?
That is the fun, exciting part. The hard part is the little tiny punch in the gut I get each time I realize what Evan wasn’t doing at Melody’s age. I feel a weird guilt that I didn’t know any better but also……………. relief that I didn’t know any better.
I have heard that the really hard part is when your younger child starts to move ahead of your older child developmentally.
Well, we’ll cross that bridge when we come to it. For now, we are just enjoying our kids and doing our best to celebrate all their achievements and not get caught up in every “Wow, I get it…..” moment that occurs.
Evan and our family has been a part of a research study out of the University of Louisville since he was 18 months old. I’ve talked about it here, here, and here.
A part of that study is a monthly phone conversation that I had with Dr. Carolyn Mervis, the principal investigator in the study. I had multiple forms to fill out monthly, to update Dr. Mervis on Evan’s speech and language process. Some months I looked forward to the call, because I was excited to share the new words Evan was using. Some months I waited until the very last minute to do the forms because I knew he hadn’t made much progress that month, or maybe our lives were crazy that month and I hadn’t noticed any big changes. (ie: Melody’s birth, one of my miscarriages, etc)
Some items would stay unmarked for months, sometimes years, “Does your child use his/her index finger to show INTEREST in something, not just to ask for something?”
Nope. Still doesn’t really do that.
But there was one item that puzzled me month after month.
The item said, ” When your child is playing with a toy, does he/she look at you and then back at the toy?”
I remember admitting to Dr. Mervis one month, that I didn’t quite know what that looked like. I’ll never forget what she said. “You’ll know it when you see it,”
Ok sure, I’ll just figure it out on my own.
Well, until a few months ago, I don’t think I really knew, but I do now.
Look at me, Mama!
I know now because Melody does it, all day, every day. She crawls around playing with toys, standing up, cruising, playing again, all the while, she looks to see if I am paying attention.
So that is what she meant.
Evan looks at me. We cuddle together, we sing, we play rough house games and we check in all during those times. But “social referencing,” or checking in with your play partner, loved one, etc while interacting…it just doesn’t come as naturally to him. He does it more now, especially when in a situation where he is not familiar. He might look to me, because he needs comfort or security.
Melody does it because she is a typically developing 9 month old who wants to make sure I am paying attention. Just because.
Sometimes this feels amazing, exhilarating almost. To know that she is “on track,” that she wants to make sure I am there. Something we still “work on” with Evan. We have to be intentional about encouraging referencing and the motivation behind it. To know that it won’t be so hard with Melody. (not that she won’t have her own set of hard)
Sometimes I feel a pit in my stomach. I feel guilty that I am excited. I realize how incredibly hard Evan works for all his milestones.
Melody is standing on her own, and almost walking at nine months.
Evan walked at 25 months. I can remember it like it was yesterday. It was so exciting.
I know….they are different people. And not just because of their chromosomal makeup. They are different genders, different personality types, etc. I shouldn’t compare.
But having a child with special needs born first, it is hard not to.
I remember being pregnant with Melody and talking with other friends who had their child with Williams Syndrome first, and than a second child without special needs. They said it would be so different. Not bad, not good, not better. Just different.
I couldn’t agree more.
But I will say this, having the two of them together, is waybetter.
My world was broken. My heart was sore. My soul felt very depleted. I was sure that our chances of having a sibling for Evan were extremely slim if not gone.
Over time I came to accept that, and embrace the family of three that we had become. But there was always a little voice inside that whispered, “a sibling would be so good. for everyone.”
Fast forward to the present. We have a thriving almost seven month old little lady. She makes her presence known and her development is one of the most amazing things I have ever witnessed. Because of how hard Evan had to fight for each milestone, it just blows me away how rapidly things are happening for Melody. I am torn on a daily basis between shouting how excited I am from the rooftops, or feeling compelled to compare this experience with Evan’s first year with each new developmental leap she makes. I am so glad we had our children in the order we did. Evan’s experience was completely his and his alone. I had nothing to compare it to, so I didn’t feel the delays as heavily as I might have, if he had an older sibling.
I felt my eyes sting with tears the other night. I was reflecting on how I prayed nightly while pregnant with Melody. I prayed that Evan’s sister would fiercely love and defend him. That he would be her hero and they would be good for each other.
Even though she now takes things away from him and she loves to yank his hair, you can see adoration in her eyes. I hold her up to look at his school picture before he gets home from school and she giggles and kicks her legs all around in excitement.
Melody has her whole life ahead to decide who she is, and who she wants to become . But for now, I will revel in their relationship.
Yes, I’m still alive. Barely kicking but alive. And well.
One day old baby girl and her mama
Seriously though, we did it. We had a second baby. A daughter. Boy do I love saying that.
No complications at birth, no digestive issues as of yet, no cardiologist visits, no red flags. Relief at every corner. We know that isn’t a permanent feeling but I’ll take it.
Melody has showed us from day one that she is HERE and she needs to be heard.
Evan and “Pipes”
First time brother meets sister
I keep saying, “She is going to give us a run for our money,” and Todd said so truthfully back to me, “I’m counting on it.”
Which is so incredibly true. I would be lying if I said my truest, most real hopes and dreams for Melody include her being able to watch out for her big brother. Being able to stick up for him, model skills and language that he can’t learn from us, and most of all, love him with a fierceness only she could.
I often feel guilt thinking those things because the last thing I want to do is put pressure on a little girl who isn’t even four months yet. I want her to grow into her own person and figure out what and who it is that SHE wants to love, support, and be a part of.
But then I see her gazing at Evan. Watching his every move. Smiling at his laugh. Studying his actions. And slowly Evan is returning that gaze. Most of the time we have to prompt him to talk about her or acknowledge her presence. Except for when she is hiccupping.
He LOVES that. He will imitate her and say “Silly!”
But the other day I was in the kitchen getting his dinner ready. Melody was in the exersaucer and Evan was playing with the music on the front. (go figure). They were in the living room, out of my direct sight.
All of a sudden I hear, “Hi Melody!”
My heart soared. Just typing it brings tears to my eyes. He wanted to connect with her, just because. And he did it with words. Such a small two words for most people but for us…
He has adopted the phrase “yes, please,” after everything he asks for these days. I didn’t teach it to him in that exact way, but it has stuck.